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Wednesday, 26 February 2014

Eating Disorders Awareness Week 2014

This week (24th
February – 2nd March) is Eating Disorders Awareness Week. I’ve been
wanting to do a blog post about eating disorders for a while, but have been
quite nervous to do it because I want to make sure I get it right, as it’s such
an important and sensitive issue to talk about. So, this week seemed like the
perfect opportunity to give it a go. As well as being Eating Disorders
Awareness Week, it is also Beat's 25th Anniversary. If you haven’t heard of Beat, they are the UK’s
leading eating disorder charity, providing support and resources to anyone
affected by eating disorders – be it sufferers themselves, friends, families
and schools.

Beat has been an invaluable
source of support to me, as well as millions of others. They provide two
separate help lines – one for adults and the other for young people, a UK wide
network of self help and support groups and online support including
information, message boards and live chat. As well as this they provide expert
knowledge, education and training to health and social care professionals and
support and encourage research into eating disorders.

Over 1.6 million men and women
in the UK are affected by eating disorders, and they have the highest mortality
rate of any mental illness, at approximately 20%. This is one reason why I
believe raising awareness and understanding is so important – treatment needs
improving and more research is essential in the quest to finally beating eating
disorders once and for all.

The strap-line for this
year’s awareness week is ‘Sock it to Eating Disorders!’ You can read about
where the inspiration for Sock it to Eating Disorders came from here.
I thought it might help to briefly (or probably not so briefly, I’m afraid!)
tell my story, to explain why I am so passionate about raising awareness and
fundraising for this cause.

My story

For as far back as I can
remember I have had issues around food, my body and self-esteem. I can’t
remember a time when I felt comfortable with who I was, and even as a young
child I would go through phases of ‘healthy eating,’ where I would make very
specific rules about what I could/couldn’t eat, how much water I needed to
drink and what exercise I should be doing. This never really became a problem –
I just seemed to be a child who was interested in nutrition and food, and it
didn’t affect my day-to-day life too much. When I was in Junior School I began
to get bullied (mainly by one boy) about my weight, and from then on I became transfixed
on how big I was compared to others. I thought more about what I was eating and
began to get more self-conscious about the clothes I wore and the activities I
took part in. I spent a lot of my spare time dancing, which I absolutely loved,
but as I grew more and more uncomfortable with my body I enjoyed the dancing
less and less.

Things began to really
snowball when I was diagnosed with M.E/CFS at 15. I was having digestive
problems, could barely get out of bed because I felt so exhausted and was in
constant pain. Consequently I spent quite a long time struggling to eat an
awful lot, which resulted in me losing a lot of weight (unintentionally at the
time). People started to comment on my weight loss – to start with they were
quite positive comments, which I’d never heard before and gave me quite a boost
in my self-esteem. My GP had asked my Mum to weigh me every day and keep a
record of what my weight was doing (I feel that this was a big mistake as it
made me even more preoccupied with my weight). I soon started to get a bit of a
‘buzz’ whenever my weight decreased, and before I knew it I was sucked into the
grips of an eating disorder. Alongside this my mood had seriously deteriorated,
possibly caused by my poor physical health, although I believe there were
probably a whole mixture of reasons for it. Eventually I was diagnosed with
clinical depression, referred to CAMHS, had regular sessions with a
psychiatrist and was tried on a whole variety of anti-depressants.

This continued for a year
or so, with my physical health getting no better (leading me to missing large
chunks of school, completely losing my social life and a lot of my friends, and
having to cut down the amount of GCSEs I could take to 7). My mental health
continued to decline – my weight continued to decrease, I was regularly
self-harming and took several overdoses. However, my diagnosis was still just
Clinical Depression, and as much as my parents fought for them to recognise I
had an eating disorder, they were having none of it. Eventually, in 2005, just
as I was meant to start college, I was admitted to an Adolescent Psychiatric
Unit in Winchester, to give me somewhere that could keep me safe and hopefully
help improve my mood. I can still remember clearly the day I was admitted and
my Mum and Dad having to leave me there, not really knowing much about what
would happen next. Over the next couple of months I was left to my own devices
when it came to eating (or rather not eating in my case) and my mood got worse
rather than better. Visitors were only allowed on Wednesday evenings, and
depending on your state of mind you could be granted weekend leave. I hated it
– I felt like they didn’t understand me and every evening I would ring my
parents in tears, begging them to come and get me. This particular unit
specialised in treating eating disorders, and it used to really get to me
seeing the other young people getting help for their eating disorders, while I
was being left to struggle on my own with mine.

Finally, after a few months
of being there, we had a big meeting with my parents and care team, and my
Psychiatrist said that after observing me it was clear that I did have an
eating disorder. I was diagnosed with EDNOS (Eating Disorder Not Otherwise
Specified) and placed on the eating disorder programme. It wasn’t easy at all –
sitting at a table being constantly watched while you eat, not being allowed to
be on your own after meals, no exercise and so on, but it was the best thing to
happen to me – I finally felt that someone understood me. I made some amazing
friends in that unit, a lot of whom I still speak to today, and after 7 and ½
months I was discharged back home with a healthy BMI. It was pretty tricky at
first and I actually really missed the Unit – it had become my home, my safe
haven where I didn’t have to deal with the outside world. I was now seeing an
eating disorder nurse weekly in the community, and struggled for quite a while
to maintain my weight and stay on track. However, over time things got a bit
easier. I started back at college, doing a course I loved, made some new
friends and actually had a bit of a social life again! I had even applied to go
to University in Portsmouth. The next few years I stayed fairly stable, and
when I went off to University I was discharged from all mental health services.

Unfortunately, I only
lasted a few months at University before I started getting ill again. My
physical health was declining, my depression dipped rather suddenly and I was
aware my weight was starting to spiral again. But this time I managed to catch
myself before I fell too hard. I decided to leave Uni, go back home and get my
health back on track, which is what I did. I began studying Psychology with the
Open University and working part-time at a local Secondary School. Things were
good, the best they had ever been, for a few years.

Then came 2012 – the year
everything started going wrong again. In the February I was sent home from work
feeling really poorly – I had, what I thought, was a stomach bug, but it just
didn’t go away. Everything I was eating just seemed to go through me, I was
exhausted all the time, the pain was coming back and I just felt generally
awful. I had the usual blood tests, which didn’t give any clue as to what was
wrong. Eventually I was referred to a gastroenterologist, who booked me in for
an OGD and colonoscopy, which she wanted done ASAP. But my notes got lost, and
it took until July before I eventually had the tests. I was very unwell
afterwards, and ended up back in A&E, spending a week in hospital trying to
stabilise me. They sent me home feeling worse than when I came in – by this
time I had lost a lot of weight and was incredibly weak. After finally being
able to see the consultant again, she decided to admit me the next day to be
tube fed. Up until this point I was convinced my problems were purely physical,
but once I had the NG tube and began putting on a bit of weight, I realised
that my eating disorder had also come back with a vengeance. I was tube fed for
about 6 weeks and managed to put on a small amount of weight, which they did
further tests. The only conclusion they could reach was that I had a problem
with the way my nerves in my intestines work, so they don’t transport food
properly through the bowel. The tube was removed, despite me begging them not
to – I hadn’t eaten anything for over 6 weeks and I told them my head was in a
very bad place. Still, the tube came out and I pretty much lost the plot. I
don’t remember much about the next few weeks – only that I had refused to eat
or drink for over a week.

The eating disorder service
was contacted, but I was told I wasn’t underweight enough to access inpatient
treatment, and I wouldn’t be accepted for day treatment because I was too
unwell. I’ve never felt so scared and stuck – if I couldn’t have either
treatment, what was I meant to do? The hospital were trying to discharge me
home, but my parents refused to take me, on the grounds that in less than 24
hours they would be calling an ambulance when I collapsed from dehydration and malnutrition.
I’m definitely not proud of what happened next, but I’ve also learnt that I
shouldn’t be ashamed either – it got to the point where I had to be sectioned
and transferred to a general psychiatric hospital, who had very little
understanding of eating disorders. Thankfully, this was enough to shock me into
at least starting to drink water again. If I hadn’t done that, I honestly don’t
know what would have happened to me. Very gradually, with the help of an
amazing psychiatrist and some very understanding nurses, I began to eat again.
Not a lot I have to add – literally a couple of mouthfuls a day, but it was a
start. My medication was reviewed and as I got a little bit stronger I was
referred back to the eating disorder service, although I still wasn’t well
enough to receive help with them for another few weeks.

Finally, I was re-diagnosed
with Atypical Anorexia, Clinical Depression and Borderline Personality Disorder
and became a day patient in November 2012. It’s got to be one of the hardest
things I’ve ever had to do, but I continued to attend until my BMI was in the
health range again, and was discharged to outpatient care in April 2013. I
still saw my psychologist weekly but could not maintain my weight. They
eventually decided there was nothing else they could do for me, because I wasn’t
maintaining my weight, and I was discharged from the eating disorder service in
January 2014. That brings us up to where I am today – still fighting every day
to be well, just without the help of the eating disorder service. I have a CPN,
who is really trying to do all she can to help, but I do feel let down by the
eating disorder service. They got me to a healthy weight and then basically let
me go, which I feel is so wrong. Eating Disorders are a mental illness – weight
is only a physical symptom of the inner turmoil, so simply restoring a person’s
weight does not mean they are cured. I’m going to keep fighting though, even if
I have to do it on my own. I’ve been fighting for 10 years – I’m not going to
stop now.

*I just want to add a disclaimer –
this is all my own opinion and shouldn’t be taken as medical advice. If you are
concerned that you, or someone you know, may have an eating disorder, please
speak to your GP or contact Beat for advice.

Do you have any experience of eating
disorders, either yourself or someone close to you? Are there any questions
about eating disorders that you would like answering?

4 comments:

Hi Jen, thank you for bravely sharing your story. It's good to know more about what you have been through, I remember your blogging back in 2005 on LJ but was never quite sure what you have been through since.You've done an amazing job of raising awareness, I hope your feeling better and can stay out of hospital soon x

Hello and welcome...

to Ramblings of a Jaffa Cat! My name is Jenny, I'm 28 and live in Hampshire. I'm a huge fan of Disney, tea and The Simpsons. I love to talk about fashion, beauty, skincare and also raise awareness of mental and physical health problems. Contact me at jaffacat44@gmail.com